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FOI 0889 2020/21 22q11.2 Deletion Syndrome Queries

Freedom of Information Request: 0889 2020/21

I would be grateful if you could please provide information as to:

  • When did the Ethics Committee discuss the treatment of 22q11.2 deletion syndrome since 2015
  • a)         babies        b)         children     c)         adults

Please be aware the treatment of 22q11.2 deletion syndrome has not been to the Trust’s Clinical Ethics Group for discussion.         

  • Which specialists were involved in this discussion and documents/emails in relation to this. 
  • What pathway was discussed and which specialists. 
  • The discussion around IVF Pre-Implantation Genetic diagnosis issues and what tests are done before that procedure? 
  • Treatment issues and which specialists were to be involved particularly that of adults 
  • End of Life pathway planning. 

The above questions are not applicable

  • Could you also please provide the transfer of care policies whether transfer a) in to the Trust from another Trust and b) out of the Trust Please see attached document Ref 28 V 7 Discharge Policy USE
  • Could you please provide the numbers of individuals who have been found to have the deletion whatever age that are cared for within the Trust.

The below data is for inpatient admissions where deletion syndrome was recorded as one of the diagnosis since 01/07/2014 (please note we cannot provide outpatient data)

Heartlands, Good Hope and Solihull Hospitals: 31 inpatients

Queen Elizabeth Hospital Birmingham: 15 admissions

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